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Monday, March 21, 2016

Today is 3/21, which means that it's World Down Syndrome Day, in honor of the 3rd copy of the 21st chromosome. Our community chooses to celebrate in many different ways, from wearing crazy socks to posting pictures on social media of our loved ones with Ds. I usually make some basic statement about what Down syndrome means to our family under an Instagram picture and consider it done. But since I a) haven't posted to the blog in ages (sorry; I also realize my last post was, ironically, about my New Year's resolution to write more) and b) have a bit more to say today than usual, I decided to make it a full-fledged entry. I haven't written about Down syndrome in a while, so there's quite a bit of commentary I want to get off my chest and it's not all pretty. But keep reading; I like to end on a high note.

The purpose of WDSD, which began in 2006 and was recognized by the UN in 2012, is to promote awareness for individuals with Down syndrome. There's something very special about a community coming together with one voice to advocate for our children, brothers, sisters, and friends. We want desperately for society to recognize the worth of individuals with Down syndrome and that they can play vital roles in their communities. But sometimes I worry that days like today paint an unrealistically rosy picture of families raising kids with Trisomy 21. We need a day of awareness because Down syndrome means we have hurdles to jump and struggles to overcome, but I've learned that it's frowned upon to admit that raising a child with Down syndrome is challenging. And there are members of this community who will roast me for this comment, especially on a day of awareness and celebration, but sometimes Down syndrome is hard.

Until now, it was a part of my son that necessitated extra doctor's appointments and early intervention. But as I watch Quinn move from toddlerhood to legit preschooler, his delays in speech and cognition are making life more difficult for him and it breaks my heart a little. Quinn is typically a happy little guy, but I can't help but blame Down syndrome for the things that upset him. Down syndrome is the reason that he can't express what he needs. Down syndrome is the reason that he isn't potty-trained, that he doesn't know his colors or shapes yet, that he has to have yet another surgery on Friday (it's just a routine tonsillectomy, but this is his 3rd surgery in as many years, and Down syndrome is the reason we'll likely have to stay overnight when other kids receiving the same procedure will sleep in their own beds that night. Down syndrome makes it difficult for Quinn's oxygen saturation to normalize after anesthesia, requiring additional observation). And in the grand scheme of things, these are minor issues. Quinn will catch up, he will learn to speak, he is relatively healthy, and he has a support system that will ensure his well-being both now and in the future. But as any special needs parent will tell you, our lives as parents are different because of Down syndrome. Our decisions are always made with Down syndrome in mind, from something as simple as where to eat dinner to as complex as where to live and send our kids to school. And just because we put on a brave face and act like it's no big deal, sometimes Down syndrome is overwhelming.

On this day especially, I wantpeople to believe that my kid is capable of living a fulfilling and purposeful life, that he has so many things to contribute to society. I need people to believe this. But it also makes me feel like I'm not allowed to discuss the challenges we face. Sometimes these moments of awareness gloss over our needs and make us feel like we we're not allowed to doubt their future success, which isn't really fair because I have the same concerns and worries for Atticus and Lucy, too. Why can't I worry about Quinn out loud? If we spend all our time advocating for how much our kids are like everyone else, people might forget that there are a unique set of obstacles before us, and that we need support as much as we need acceptance. The future of special education, quality healthcare, and community advocacy groups all require adequate funding and support, none of which will happen if we keep convincing everyone within earshot that Down syndrome is the best thing to ever happen to us (yes, I have read those words many times).

I'll be honest; I wondered if I should even post this. I know there are readers out there who are considering termination after a prenatal diagnosis. I'm terrified that this post will sway your decision and I implore you to keep reading. There are readers out there who just had a baby with Down syndrome and you feel lost and scared. These words may have offered you little comfort, so I beg you to make it to the end.

While there are times that I hate Down syndrome, there are times when I love it. I love the community of support that comes with this diagnosis. If you are new to this world, you are now a part of our family. And we're pretty freakin' awesome. I love the pure, unadulterated joy that radiates from Quinn. He enjoys his life and we enjoy him. He loves those around him with such willful abandon that I know his soul is pure and I have grown as a person because of him. Quinn has made me more patient, more understanding, and more kind. Quinn is a magnet for attention, too. We can't go anywhere without strangers fawning over him because he's cute. I mean really, really cute. I suppose we can thank Down syndrome for that as well. And for all the things that make our lives more challenging, I wouldn't trade it for a Quinn without Down syndrome. Because that extra chromosome exists in every cell in his body, which means that it is a part of his sparkling personality, his beautiful blue eyes, and his stubborn, yet resilient charm. Those things will serve him well in the future and, while they might not erase the challenges caused by that extra chromosome, they do make it all worthwhile.